PB2224: IMPACT OF COVID-19 PANDEMIC ON PATIENTS WITH SICKLE CELL DISEASE: RESULTS FROM THE REAL WORLD ASSESSMENT SURVEY FOR SICKLE CELL DISEASE IN SAUDI (ROARS)
Authors: H. Ezzat, A. Al Zayed, H. Al Saeed, M. AlDarwish, M. Albagshi, H. Malhan, A. Tarawa, A. AlManea, I. AlHazmi, M. Qari, A. Al Jefr, A. Alzahrani, M. Alzahran, W. Soliman, M. Arsalan, W. Jastaniah
Journal: HemaSphere (2022)

Background: Sickle cell disease (SCD) is a chronic hemolytic disease with multisystem involvement leading to significant morbidities and mortalities. SCD confers a significant burden on patients (pts), including a high impact on quality of life (QoL). The impact of the COVID-19 pandemic on pts with SCD has not been well characterized. Aims: The Real World Assessment Survey for Sickle Cell Disease in the Kingdom of Saudi Arabia (KSA) (ROARS) is a cross-sectional survey of pts with SCD and treating healthcare professionals (HCPs), which was designed to understand several aspects of the burden of SCD in KSA. In this study, we examined the impact of the COVID-19 pandemic on SCD pts based on findings from ROARS. Methods: Between September and December 2021, pts with SCD (age: 5-65 years) and HCPs (>2 years SCD experience, SCD load >50 pts, >50% of clinical practice time spent treating SCD pts) were surveyed (in person or via caregiver if pts were between 5-14 years of age) using the structured, bilingual ROARS questionnaires (English/Arabic) through personal quantitative web-assisted telephone interviews. ROARS was developed by SCD experts from KSA and Novartis, and includes the global health domain of Patient-Reported Outcomes Measurement Information System (PROMIS), a validated tool for assessing QoL among SCD pts and caregivers of different age ranges. Questions covered topics such as disease impact on QoL, symptoms, disease complications, treatment goals, treatment strategies, and COVID-19. Descriptive statistics were used to summarize the results. Results: A total of 1011 pts (pediatric: n=504; adult: n=507) and 64 HCPs (hematologists: n=31; non-hematologists: n=33) completed the survey. Data were collected from 11 cities, with 90% of respondents from Eastern and South-Western provinces of KSA where the SCD prevalence is highest. The top 5 complications reported by both pediatric and adult pts were fever (52%), joint issues (49%), swollen and/or painful fingers/toes (47%), infections (37%), and tight chest pain (35%). A high proportion of pts (80%) felt that the pandemic had an impact on their medical care (Figure) (adults: 85%;[PM(1] pediatric: 76%). The impact of COVID-19 on medical care was particularly evident in pts treated with hydroxyurea compared to untreated pts (adults: 91% and 79%; pediatric: 84% and 74%). When survey results were stratified by the number of vaso-occlusive crises (VOCs), 85% of adult pts reported an impact of the pandemic on their medical care, regardless of the VOC frequency (<5 or ≥5); among pediatric pts, 72% with ≥5 VOCs and 83% with <5 VOCs reported an impact. Mental/emotional impact of the pandemic was reported by 66% of pts (adults: 68%; pediatric: 64%). The majority of pts missed or cancelled their appointments due to COVID-19 (adults: 81%; pediatric: 74%). Overall, 39% of the pts reported the impact of the pandemic as severe (Figure). From the HCPs’ perspective, 86% felt that COVID-19 affected their medical service, and 78% thought it affected their pts’ mental/emotional well-being. Overall, 16% of HCPs thought the pandemic significantly impacted their pts. Image:Summary/Conclusion: The ROARS survey among Saudi pts with SCD found that the majority of pts, especially adults, felt the COVID-19 pandemic had an impact on their medical care and emotional well-being. The impact of COVID-19 was also reflected in a decline in pt care, as reported by HCPs. In future, it would be interesting to understand the impact of the pandemic on vaccinated vs unvaccinated SCD pts.